Living with Alzheimer’s

My own personal experience of becoming a care taker of some one with Alzheimer’s began in January of this year, 2009. Though I had been a practicing registered nurse since 1982 and had taken care of many a patient that had either Alzheimer’s, or some other form of cognitive impairment or dementia. I was totally unprepared however when I now became my mothers primary caretaker

My mothers dementia began as I said early this year. The first symptoms were text book classic. Beginning first with sundown syndrome in which she began to become progressively more confused and agitated as the sun set and the night would pursue. Prowling behavior through a house she has lived in for 40 years as if she had forgotten what was in a certain drawer. She would stare at the phone book for also her list of personal telephone numbers of friends and family seemingly unable to cognitively match name with number. In addition this behavior would usually begin around midnight and continue until 3 or 4 a.m. Thank goodness she could not summon enough concentration and coordination to dial the numbers, though my husband was awakened many nights to come down and have coffee with her at midnight. It seems she could remember his cell number!

We did what most families do, if they have the good fortune of having a good primary physician, as many in this country today do not. We however did, and he had been familiar with her for at least forty years. He promptly recognized the symptoms and prescribed aricept 5 mg initially to increase to 10 mg twice daily. Mother was in total denial regarding her illness and fought with every ounce of strength left in her to convince herself and family that we were wrong and she was not “crazy”. We had many a fight , raised voices and angry outbursts, during this time primarily regarding her driving . She was totally unsafe to drive, but it was the last issue of independence she held on to. My father would disable the car so even if she found the keys it would not be operational. It was now march 2009. My husband and I sold our home and bought a small house trailer to but in their back yard so that we could be only steps away.

May 11th she fell and fractured her left hip. In the process of a total hip replacement and recuperation in rehab for physical therapy, she continued to have emotional outbursts involving going home, eating, and cooperating with the therapists. She was started on namenda 5mg twice daily as well as celexa 20mg daily because she would also threaten suicide if her requests were not met.

Now in August she is home, yet unable to be left alone, does ambulate well enough to get out in the community grocery shopping or going to restaurants. The only other addition to her medications has been xanax 0.5mg twice daily and xanax 0.25mg for any uncontrollable behavior and ambien 10mg for sleep. For not we have stayed away from the stronger psychotic medication as seroquel and geodon, but we may need them in the future as the disease progresses as inevitably it will. We have also included COQ10, multivitamins and turmeric extract. The turmeric has only been added recently so I really haven’t had time to evaluate its effectiveness.

At this point we have her “controlled” yet I feel we have done little to correct the dementia and have an appointment to be fully evaluated by a neurologist in September

No one can adequately prepare you for the slow loss of a loved one, and that’s truly what it is. The deterioration is slow and painful to watch. Changes in behavior are extremely difficult to predict. As an only child myself and my family have always been so precious to her. Now she doesn’t remember most of their names. Many times she has been physically and verbally abusive to my father and myself but that change in personality is all part of the disease, good days and bad days. You learn to take one day at a time, while hoping for a medical advancement or a cure.